As multiple sclerosis patients, our MS riddled bodies continually fight us like a WWE wrestling match with no rules. We know that we must stand firm against this brutal beast to avoid the terrifying disease prospects that can arrive when we let our guards down. Assistance is excellent and very much appreciated, yet we need to try to hold onto as much independence and self-reliance as possible. This monster, called MS, has violently ripped so much from our control that we need to hold carefully onto everything that we can. There is a desire to tightly clasp onto the remaining competence that we have like a little girl who just got her favorite doll for Christmas.
One morning when the lights came on, I woke up, and something felt a little discombobulated. I tend to push myself when that happens, trying to find that line of doing too much and not crossing it. So I muddled through my morning routine cautiously aware of every maneuver that I made. I spouted my memorized morning mantra like a cheerleader repeats a cheer, helping to focus my concentration. I stayed overly guarded amid every movement prudently positioning myself during transfers, or anytime that I bent, leaned, and reached. The entire morning I was pleasantly surprised that no catastrophic event occurred though several minor issues slightly slowed my advancement.
My dad arrived to take me to aqua therapy, and since both of us prefer to arrive early, we had plenty of time. As I put my coat on, I had significant difficulty with the zipper and struggled with it for several minutes. It felt like I was trying to thumb wrestle while using someone else’s thumbs and I was blindfolded. My dad saw my winter wear skirmish and, in all of his infinite wisdom, asked: “Why don’t you just not go today?” I understand his reasoning as he was trying to make my life easier by suggesting that I back down from the obstacle in my path. So I stopped and quietly counted to ten and began anew with the zipper this time successfully securing my coat. I never give up as my sanity depends on it.
When my friend and I spoke about this issue, she told me that her husband acts the same way. If he hears Heather say that something is becoming a significant struggle, he tells her to leave it for him to do. Heather pointed out that she understands that her husband is trying to be helpful, but at the same time, she does not want to give up. Multiple sclerosis has taken so much from us that we do not want to give up anything else willingly, she said.
Most MSers that I know do not want to back down from obstructions simply to make their lives easier. You cannot persevere over an obstacle if you turn tail and run or hide under a blanket to avoid the challenge. One does not grow in life when everything is running smoothly, but we grow when we face adversity head-on. The individuals that I know with multiple sclerosis desire to live life as independently as possible. We want to be able to do as much on our own because MSers know and fear the degenerative disease possibilities. Knowing what we do about the conceivable symptoms, our imaginations run wild, picturing these horror stories. This ambition to avoid what could be our fate encourages us always to act and evade the maleficent potentiality of MS.
My persistently pertinacious and fierce philosophy has helped me to achieve seemingly insurmountable odds. A never give up ideology has taught me to have the fortitude to keep pressing forward even when others tell me that things are impossible. They said to give up, do not waste your energy, you can’t, it is inconceivable, and yet I have prevailed. My intransigent attitude helped me complete a 5k in my wheelchair as well as swimming eight miles with no leg assistance. So the answer is no, I will not buckle to the fright of the masses I will not back down from fear nor bow down to the word “can’t.” I may be slow, but I am not in a race as success comes differently and has a unique meaning for everyone. Those of us with Multiple sclerosis need to hang onto the dignity that remains and not let MS steal that as well.
Think slowly, move cautiously, but never give up.